caring for the survivors…

I’m a “survivor”. A cancer survivor. And my question is…

How well does your medical system look after survivors. The people, like you and I, who have actually been saved by the drugs, interventions and modern medicine?

As a breast cancer survivor I feel abandoned by my medical system. My ongoing health and the quality of life I have during my survival feels of no interest to my doctors and health system.

Take them in. Treat them. Then send ’em on their way. This is what our health sytem appears to be set up for.

But what about the residual effects from the cancer or the treatments? We have chemo plans and treatment plans. Where is the survival plan?

ASCO (the American Society of Clinical Oncologists) has a statement. They have recognised the need for ongoing support for those the medical system has fought so hard to save. Their statement can be found here: http://connection.asco.org/Magazine/Article/ID/3440/ASCO-Issues-Recommendations-for-Improving-Cancer-Survivor-Care.aspx

“Most patients still want to see their oncologists even after they have finished active treatment. Oncologists are well positioned to lead and develop a strategy for coordinating follow-up care with primary care providers,” said 2012-2013 ASCO President Sandra M. Swain, MD, FACP. “We can’t let these patients, who are living examples of the progress we have achieved in cancer, fall through the cracks. ASCO’s statement provides a roadmap for closing the gap in survivor care.”

Their recommendations are:

Promote patient-centered coordinated care through the use of shared-care models.

Increase adoption of quality improvement programs, such as QOPI®, which help physicians monitor and improve care for all survivors.

Expand research on long-term and late effects to develop the evidence base.

Strengthen the education of health care providers on survivorship care.

Educate and empower cancer survivors and their families to advocate for their unique needs.

As a recent breast cancer survivor in Australia I have seen none of this. I have not, so far, had a medical professional ask me “How are you?” or “How are you coping?”. And, I am desperate for someone to ask, since I feel so lost in my survivorship.

I have recently changed to a new doctor. At my next appointment I will be asking for a plan. For some help with working this all out. For help with trying to address and resolve the residual effects of the drugs and treatments.

If you are a survivor, how have you found the follow-up from your medical professionals, team and system?

❤ Jenn

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A boost for brain training: Lumosity can help lift ‘chemo fog,’ study finds

Worried about chemo brain? This start-up appears, from research, to have games that can help improve your brain function with regular “brain training”. I’m going to give it a go to see if it can improve my defixits after the whole chemo experience.

What I need is to be able to improve my memory recall which really suffered…

Gigaom

Brain training – that booming yet much-debated business – just got another feather in its cap.

In a study published in the peer-reviewed journal Clinical Breast Cancer, Stanford researchers demonstrated that breast cancer patients who had been treated with chemotherapy improved their cognitive function after using exercises developed by brain training startup Lumosity. Created by neuroscientists, Lumosity offers dozens of games (to paying subscribers around the world) that claim to improve their memory, attention and creativity.

In the last few years, several studies have demonstrated that up to 75 percent of cancer patients can experience cognitive impairment and mental dullness, that can last five years or longer, after undergoing chemotherapy.

But research led by Shelli Kesler, assistant professor of psychiatry and behavioral sciences at Stanford, found that breast cancer survivors who trained with Lumosity four times a week for 12 weeks significantly improved in measures of executive function…

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our medical choices aren’t always painless…

Can I have a bit of a whine?

This past week I had a revision surgery following my bilateral mastectomy and free TRAM reconstruction last September. This surgery involved reopening the incisions on both breasts and reducing the size of my reconstructed breasts and “lifting” them.

Surgery went well and the recovery is going well too. The big bandages all came off on Monday during a visit to the plastic surgeon’s office, and the stitches will be coming out on Thursday.

I am off work until at least Thursday after the stitches come out. Most likely I will go back next Monday because while I start my days feeling great things go downhill by late afternoon and I am reaching for the pain tablets. My job requires me to be “on the ball” and my brain is a bit scattered this week after the general anaesthetic. My fourth general in the 16 months since the whole breast cancer experience started!

Today Angelina Jolie made public her BRCA positive status and her decision to have a prophylactic bilateral mastectomy and reconstruction. Her piece in The New York Times is brilliant. See it here: http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html

Angelina’s choice in removing her breasts is a major step towards showing women that they have been blinded by the pink ribbons. Women on Twitter are already asking “why would she do this when breast cancer is so curable?”.

I have been answering any of these messages that I see tagged with #breastcancer. I have been telling women that they have been blinded to the truth about breast cancer. It is NOT really that curable. Early detection does not equal cure. Researchers have a long long way still to go until we can truly say that breast cancer at any stage is curable.

Got that message now everyone? I thank Angelina for her openness!

Now to get to the whinge…

Angelina Jolie, while helping publicise the reality of the decision, brushed over the reality of the process. She said “Two weeks later I had the major surgery, where the breast tissue is removed and temporary fillers are put in place. The operation can take eight hours. You wake up with drain tubes and expanders in your breasts. It does feel like a scene out of a science-fiction film. But days after surgery you can be back to a normal life.”

Days? How many days? She made it sound so easy!

Maybe it was easy for her. She’s fit and has the best help at hand. How many nannies have been reported? What does “getting back to work” really mean in her life?

Hmmm, I think I’m due for another pain tablet…

the never ending…

“active” treatment after my early stage breast cancer experience is over. I’m trying to get on with life. Back into my work (I’m a cancer clinical trial coordinator), my study (working my way slowly through a science degree) and the rest of my life.

THEORETICALLY all I am doing now is taking a Tamoxifen tablet everyday for the next 5 years, or 10 years if you follow the latest research.

But, throwing theory aside is what I want to do today…

The REALITY is that I am not only taking the Tamoxifen, with its accompanying side effects that I’ll tell you about another time, but I’m doing so much more. Today I…

1. Took a vitamin D tablet – may help strengthen bones and prevent metastatic disease.

2. Took a curcumin tablet – may help prevent metastatic disease.

3. Ate some walnuts because, you guessed it – may help prevent metastatic disease.

4. Included brocolli with our veges at dinner – may help prevent metastic disease.

5. Drank 2 cups of coffee – because recent research showed that women who drank 2 cups per day are less likely to develop metastatic breast cancer.

This is why todays post is called “never ending”. This experience is still dominating my life, and the choices I make everyday. This experience certainly appears never ending.

And, spare a thought for the women out there that already have metastatic breast cancer, or who go on to develop it. For them the experience is truly NEVER ENDING.

This past week, one of our Australian “sisters”, Angela, died of breast cancer.

I did not know her in person, and only knew her online (do visit the http://www.breastcancer.org community boards if you have breast cancer, or are supporting someone with breast cancer) very briefly. During that brief time she made an impact on many of us.

I hope that I do not join the number of women with metastatic, grade 4, breast cancer but the reality is that I can’t be anything but aware that it could easily be me, even with all this brocolli! After all, life itself is not never ending for any of us…

In the meantime, I will continue to throw brocolli in every meal, and eat walnuts everyday. And I will continue to admire those amazing women, like Angela, shining a light before many. Showing other women how to move through the experience of metastatic breast cancer with grace and bravery in the face of disaster.

❤ Jenn

another year…

A year older today and thankful for it. This is a pic of the great present that my hubby got me – that made me cry this morning…


Despite the many challenges over the past year and the residual health fall-out from this past year, it has been filled with some great experiences. This is the year I found the lost family I had been searching for (half sisters and their children). The year when I loved catching up with the family I already knew. The year when circumstances brought me back in closer touch with quite a few friends who we had seen far too little of in recent times.

This year brought us to two weddings, both for young people that we watched grow up from their first years. It was wonderful of them to include us in their special days. We loved being able to watch them starting their married life together. Brought us so many memories of when we were as young as they, and just starting out.

To my wonderful children, and their partners: You have stepped up so far this past year and have helped make a difficult time much more bearable. I have loved my shopping expeditions with my girls. I have loved watching my son mature and move from his school years into university. And I have loved meeting and getting to know your partners (this applies to my almost children Becca and Matt as well!).

This year brought not only personal challenges for us, but also financial ones (that continue). My wonderful husband has not only had to cope with supporting me emotionally through all the breast cancer crap, but has also had to hold down his demanding full-time job and worry about how to pay all the bills, including the extra medical ones rolling in. His love has been unwavering. His levels of confidence in being able to keep us all afloat have been hit though. But, through all of this he has been my ROCK.

I have had many wonderful birthday messages and each one is appreciated, just as if everyone were here in our house sharing the day with us.

❤ Jenn